An odd sore throat
In mid-December 2020, Kimbrough first developed a sore throat from a tender spot under the left side of his tongue near the back of his mouth. However, it didn't seem to be a typical sore throat since he wasn't experiencing any pain swallowing.
After visiting his family physician, Kimbrough was recommended to see an ear, nose, throat (ENT) specialist. Since Kimbrough had been a heavy smoker for 25 years until he quit in his 40s, he was concerned he might have throat cancer. However, the ENT told him that "[t]hroat cancer doesn't generate this kind of pain."
Instead, the ENT thought one of Kimbrough's salivary glands might be infected and prescribed an antibiotic. When that didn't work, the ENT looked at Kimbrough's throat with a laryngoscope. He said Kimbrough's throat looked healthy and added he thought the soreness may be related to a jaw problem, potentially temporomandibular joint dysfunction (TMJ) or a pinched nerve in his neck.
Kimbrough's dentist ruled out TMJ, so Kimbrough started seeing a chiropractor. The chiropractor recommended spinal X-rays, which showed age-related arthritis in Kimbrough's C3 vertebrae near his jaw.
Over the next two months, the chiropractor performed neck "adjustments" which provided some pain relief at first, but by the end of March, Kimbrough's pain had gotten worse. The chiropractor sent Kimbrough to an anesthesiologist specializing in pain management who administered a nerve block — an injection consisting of a painkiller and a steroid to help reduce inflammation.
The nerve block didn't help, so Kimbrough's anesthesiologist ordered an MRI of Kimbrough's cervical spine, which showed spondylosis — abnormal wear on the neck cartilage and vertebrae that can be more common in very active people. The anesthesiologist told Kimbrough he might have spinal stenosis, a common issue that increases with age caused by a narrowing of vertebrae that can affect nerves. However, there wasn't any sign of nerve compression that would explain Kimbrough's pain.
Kimbrough also consulted with an "anti-aging" doctor every four months who ordered blood tests and prescribed supplements to enhance Kimbrough's health and fitness, leading Kimbrough to take 50 pills a day.
Pain 'like a hot spear'
By July 2021, Kimbrough's pain had worsened, spreading to his left ear and eye socket and disrupting his sleep. He found that exercise seemed to help blunt what "felt like a hot spear stabbing me from my jawline, encasing my head like a vise and then radiating to my left shoulder blade," Kimbrough said.
Eventually, Kimbrough obtained an appointment in August 2021 with an expert in spinal neurosurgery at Johns Hopkins Hospital in Baltimore. The neurosurgeon looked at Kimbrough's MRI and confirmed the degenerative changes in his neck, but said the pain on Kimbrough's left side was strange, because the MRI suggested the pain should be on his right.
The neurosurgeon recommended Kimbrough wear a cervical collar to immobilize his neck for 20 minutes each day to see if it helped. Neither that nor the acupuncture Kimbrough elected to try helped.
In October 2021, Kimbrough's ENT suggested that his spine might not be the problem, and that instead Kimbrough may have trigeminal neuralgia (TN) — chronic debilitating facial pain caused by a nerve injury.
The ENT changed Kimbrough's medication to a drug used to treat TN. The pain "exploded," Kimbrough said. "For the first time, I began to understand why some people commit suicide." Kimbrough called his primary care doctor, who put him back on his previous medication and made a next-day appointment with a neurosurgeon in Tallahassee, FL.
The neurosurgeon couldn't find anything wrong and referred Kimbrough to a neurologist who also found nothing. The neurologist sent Kimbrough to another pain specialist who administered epidural spinal injections that had no effect. Meanwhile, the neurosurgeon at Johns Hopkins recommended Kimbrough see a nerve pain specialist at the hospital and scheduled an appointment for February 2022.
By the time of the appointment, Kimbrough had lost more than 20 pounds and couldn't swallow anything other than clear liquids. Kimbrough said the pain varied from tolerable to "like a blowtorch" and was hardly controllable, despite him taking the maximum dose of the painkiller OxyContin.
A few days before his appointment at Hopkins, Kimbrough and his wife flew to a family celebration in Arizona, and the night before, Kimbrough experienced a nose bleed that quickly stopped.
'Drowning' in his own blood
The appointment at Hopkins started with a neurological exam, and when the anesthesiologist asked Kimbrough to stick his tongue straight out, she noticed his tongue curved significantly to the left.
While he was sitting in the waiting room, blood suddenly started gushing out of Kimbrough's mouth and nose. As he was coughing and spitting out some of the blood and blood clots in his throat, Kimbrough said he remembered thinking, "I'm drowning in my own blood." Kimbrough had been taking a blood thinner to treat an irregular heartbeat for years, which can exacerbate bleeding.
Kimbrough was quickly sent to the ED. "The worry was that he could die of asphyxiation" by aspirating on his own blood, said R. Alex Harbison, the otolaryngologist who met Kimbrough in the ED. Harbison looked at Kimbrough and found a large six-centimeter mass extending from the roof of his mouth over his tonsils and to the back of his tongue.
Harbison suspected the mass was cancerous and caused by human papilloma virus (HPV). The mass, which had been growing for more than a year, had become intertwined with a nerve and irritated the left lingual artery in the throat until it ruptured, which triggered the bleeding.
Pathologists determined Kimbrough had Stage 3 squamous cell throat cancer caused by HPV-16, the most common type of HPV. HPV oral cancer is the most common head and neck cancer in the United States and typically responds to chemoradiation, especially if detected early, Boodman reports.
Kimbrough was intubated, received blood transfusions, and underwent an embolization, which plugged the artery with a coil. "After that, it's pretty much hold your breath and wait," Harbison said. "The level of anxiety was very high" because of the chance of another bleed.
Since Kimbrough was severely malnourished, he also had a feeding tube inserted, and a few days later, doctors inserted a tracheostomy tube in his neck to protect his airway. Within a week of being admitted, his condition began to stabilize.
The team at Hopkins recommended Kimbrough receive chemoradiation, which Kimbrough elected to do at Washington University in St. Louis, where one of his sons lived.
Kimbrough arrived in St. Louis on March 10 with both feeding and tracheostomy tubes in place, and was told by the medical team that chemoradiation had a 60% chance of eliminating his cancer. However, they noted that even if it was successful, Kimbrough likely may always need a feeding tube.
On the path to recovery
By the end of July, Kimbrough's feeding tube was removed, a month after he finished cancer treatment and a month before he went back to his home in Florida.
Kimbrough still can't swallow more than a few bites of very soft food, and his diet is mostly liquid. So far, his scans haven't shown any signs of cancer, and he has been able to return to work, speak normally, and even play his trombone.
Harbison said the characteristics and location of Kimbrough's tumor made it more difficult to spot, which likely delayed his diagnosis.
"Art's presentation is extremely rare," Harbison said. But someone with "persistent throat or ear pain should be investigated by an expert," he added. It's also possible the cancer was missed on the MRI in 2021, Harbison said.
Kimbrough said he wants other men to benefit from his story by learning about HPV, vaccinating their children against it, and questioning assumptions that could turn out to be wrong, like they were for him.
Kimbrough said he never considered going to another ENT for a second opinion on his sore throat, especially since the focus had been on his spine.
"Everyone was doing their best with the best of intentions," he said. "There was a fork in the road and we didn't go down that other path." (Boodman, Washington Post, 2/17)
Although clinical use of artificial intelligence (AI) is still limited, the technology may be beneficial in diagnosing rare diseases, which are often misunderstood or overlooked by regular doctors, Bina Venkataraman writes for theWashington Post.
